20 year old son

[Aneinu]

I was 22 when I was diagnosed in 1995. My kidneys failed, leading to 2 transplants. The first lasted 20 yrs. My second was this past July. Sounds like your son had an early diagnosis, which is great. I wasn't that lucky. However with medication and exercise and a healthy lifestyle I have done great make sure your son takes his medicine and that he understands the seriousness of WG and he will be fine.

Wow.
Scary.
My thoughts are with you.
Yes, it seems they caught it just as he was beginning to bleed. Lots of blood in the lungs, but before it damaged the kidney.
Thanks for the sound advice....Will do.

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[whatthewhat]

Hi Aneinu! Welcome, and I am so sorry for all that he and his loved ones have been going thru. Luckily you are in a great area, and I am so happy to hear that you are comfortable with his care.
There are other guys I have heard of his age with WG - one is studying to be a pilot even. I know many other parents (like myself) of a Weggie kid, and I would just add a word of advice that the disease in pediatrics seems to strike suddenly (including in flares) in very significant ways. I believe monitoring young people is more urgent, in fact.
All the best to him, and you.

[annekat]

Welcome, Aneinu. As you have already discovered, this is the right place to get support, friendship, and information from people who have been there and continue to connect every day with those who are newer to the disease. This is the place to feel so much less alone, and it would be nice to meet your son here, too. But I understand if he'd rather not. He needs to concentrate on getting well, and is on the right track, living in Cleveland, where there are excellent doctors. And the Cleveland Clinic is right there should you ever need help from a doc there in addition to the one you are seeing, whom you feel comfortable with. I'm a firm believer that there are lots of good docs who can treat this disease who aren't on the lists of experts that we are familiar with. Everyone above is right, your son has a good chance of getting a lot better with treatment and resuming whatever he was doing before this hit. Keep us posted, ask any questions, make use of the search function, etc.
Best wishes to both of you.

[Debbie1957]

Sorry for all your son is going thru. I can relate. My son is 28 and was diagnosed in October 2015 after I found him unconscious in a pool of blood in the bathroom floor. He had had a massive hemorrhage in his right lung, was in kidney failure and heart failure. He was actually lucky to have survived. They did plasma pherersis for 5 days not to mention all the medications and him being on the ventilator. After being in icu and going to rehab he was doing really well then he relapsed after his rheumatologist started to decrease his steroids so now he is back up on a dose of 80 mg of steroids and receiving chemotherapy 2 days a month for the next 6 months. Hopefully this will put him in remission and he will do well with his new lifestyle. I wish your son a speedy recovery. Also the rheumatologist mentioned changing to a gluten free diet if possible. I have also read some post on this site about the gluten free diet being helpful here also. I know I still have a lot to learn about this disease as it is a rare one but I agree the more we know the better off we will be. Good luck.

[debra]

Deb, hi I'm Deb also. Wow! This is a lot... How are you doing with all of this? Is you're son home? Sorry, little tired but just wanted to say welcome. Although I'm sure you'd rather be somewhere else... Others will be here to say hi... Best to you both... Deb.

[Birdie]

My son is 28 and was diagnosed in October 2015

Hi Debbie,

Welcome to the group. Sounds like your son's case is a bad one. Keep on learning, and learning, and learning, since he probably can't right now he desperately needs someone to help him understand the options presented by doctors. Everyone here will be happy to help.

Not necessary, but I suggest starting a thread in the new member introductions area of the forum. It gives you a place of your own, dedicated to helping your son by getting questions answered. If interested, here's mine: http://www.wegeners-granulomatosis.c...html#post98791

Gary

[Aneinu]

Hi Debbie,

Welcome to the group. Sounds like your son's case is a bad one. Keep on learning, and learning, and learning, since he probably can't right now he desperately needs someone to help him understand the options presented by doctors. Everyone here will be happy to help.

Not necessary, but I suggest starting a thread in the new member introductions area of the forum. It gives you a place of your own, dedicated to helping your son by getting questions answered. If interested, here's mine: http://www.wegeners-granulomatosis.c...html#post98791

Gary

We hope he gets well soon.

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[debra]

Birdie, can the post be moved? Or does Debbie, have to re post? Birdie, you're awesome... Deb.

[Birdie]

Birdie, can the post be moved? Or does Debbie, have to re post? Birdie, you're awesome... Deb.

No need to remove it Deb, and Debbie.

[debra]

Birdie, sorry, I meant can it be seperated, here and on a new intro? So two places? Thanks... Deb.